I have been waiting for a diagnosis and slowly losing my mind for 20 years now. I got my tonsils out at 19 and a few months after, started to experience symptoms of ES. I just recently found out about it during one my trying to self diagnose rabbit holes. I finally got an image from my dentist but am being dismissed by them and my ENT. I really need some validation and some one to look at this and tell me I’m not crazy 
what do I even do from here??
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Hi & welcome to the site!
Feel free to upload any imaging you have, we’re not doctors but we might be able to give you an idea of whether you’re on the right track…then perhaps you could get a referral to a more experienced doctor. Unfortunately there’s alot of ignorance still amongst doctors about ES!
You should be able to upload images now.
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Thank you so much! Just added image below.
Oh! I forgot I have these CT images but I can’t tell from these. Maybe someone else on here has more knowledge seeing it on CT. Thank you!! 
I am so sorry that you have experienced dismissal from doctors, a lot of us have! You will find so much helpful information and great people here so welcome!!
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Thank you! It’s so refreshing to talk to people who actually understand! There is so much info on here - I’ve been reading for hours!
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Jules do you see evidence of Eagles in my images by any chance?
@Emmaann - Good intuition on your part!! Indeed you have elongated styloids. If they aren’t longer than normal, they will not show up in a panoramic x-ray like yours do.
The left (right side of the image) is longer than the right & pretty thick, but the right one has an “elbow” which gives it an odd angle. Your left one is also “wavy” vs straight. Both the angle & shape of your styloids will contribute to the symptoms you have. It’s harder to see the right styloid in the sagittal image (second one) because it’s kind of shadowy, but it’s there.
I think I gave you the name of a doctor who deals w/ ES in your state when I admitted you to the forum, but in case I didn’t, try getting a consult appt. w/ •Dr. James K. Liu, 200 S. Orange Ave, Ste. 265, Livingston NJ, Dr. James K. Liu | Top Neurosurgeon in Livingston, NJ his associate might also be an option:
•Dr. Raema Mir - operated together w/ Dr. Liu - Dr. Raema Mir, MD - Marlton, NJ - Family Medicine - Book Appointment
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You are amazing! This was so informative and I can’t tell you the hope I feel right now. I’m not too far from Livingston - only about 40 Minutes and he takes my insurance! I’m honestly in shock right now that I may have a chance to feel better. After so many doctors, testing, surgeries, meds.. I would have never found him if not for this site. I have had these symptoms that progressively have gotten worse for 20 years now. Thank you so much and I will keep you posted about my appointment!
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You are most welcome!! I’m glad you found our forum & hope you can get an official diagnosis & surgery date ASAP!!
I’m so glad Dr. Liu isn’t too far from you. 
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I’m sorry that you’ve had symptoms for so long! The styloids show up really well on the panoramic x-ray as @Isaiah_40_31 has circled them…so worth looking into a diagnosis for sure, I hope the doctor that @Isaiah_40_31 mentions can help you …
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Thank you Jules!! I actually spoke with someone from the office and sent in these images and filled out all the online paperwork. They said they will have Dr. Lui and his NP look everything over and call me with next steps! I will let you know when they get back to me and what they say. I’m crossing everything!!!
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That’s good, look forward to hopefully good news 
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Hi! I just wanted to peep in on here! Dr Liu’s counter part is Dr. Ghayoour Mir.
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Hi @Emmaann . I am Gaby, and I am about 1 month post opt from my surgery with Dr Liu. He has changed my life. See what he says! Let me know if you have any questions. I am in New Jersey too! Best wishes.
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Hi @gaby!!!
Thanks for commenting! I’m so happy you got your surgery!! This all feels like a dream that I’m actually talking to people that know what I’m going through and that there is help out there. I’ve had a lot of anxiety since last Wednesday when I called the office - Emily had me send in some images and I filled out the paperwork. She told me Dr. Liu and his NP have to look over everything and they will get back to me but I haven’t heard anything yet - (I’m SURE he’s super busy). Is this what the process was like for you? Should I follow up with them? I just feel like until I have that appointment with him - I’m not going to be able to feel like this is actually happening if that makes sense.
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Thank you Gaby!!
Hi!
Emily, Alyson, and Aida are BEYOND fantastic. They are very indudated in the office, but they still move very smoothly like a well oiled machine. Right now,if you follow Dr. Liu via instagram he has been doing some conferences around the world, so Aida is filling in for his appointments. Every point of contact she handles with delicate care and gives you ample time so sometimes her repsonse is a little delayed but she WILL always get back to you. Also Dr. Liu is always getting called for emergency surgeries. They treat every paitent in this office so well, but there is a little delay. I promise they have not forgotten about you! For reference, I started with a dr in the office over from him. One day out of frustration i walked in there in person and shared my woes basically in tears with Alyson at the front desk. From there it took 2 weeks for them to even call me back, I truly thought they forgot about me. But they made my appt the next day after that, and I was already scheduled for surgery on THAT day. Emily and Aida made sure everything was taken care from that point on with ease. Once they call you everything will get rolling!! I understand the frustration, being let down by drs, and waiting! Just know you’re at the end of your road!!! Good Luck.
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@Gaby i am crying right now with relief! Thank you so much for your thorough reply. 
that is so amazing to know!! I will try to calm by anxiety down now lol - I don’t even know what else to say to people who are literally saving my life. You are all a part of this and I appreciate all the info SO much! I will keep you posted on when I get in with Dr. Liu!!
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